Sustainability, Plurality & Justice for Science & Technology in India

Who names diseases?

The naming of diseases has always been as much about politics and the human need to identify a scapegoat, as it has been about accurately labelling a new threat to life. Periodic attempts have been made to remove the subjective from the process. Three United Nations agencies – the World Health Organization (WHO), the Food and Agriculture Organization, and the World Organisation for Animal Health – play a particularly important role when it comes to infectious diseases, which don’t respect borders. WHO hosts the International Classification of Diseases (ICD), which has long assigned the final name to any human disease. And in 2015, WHO came up with an updated set of guidelines for labelling infectious diseases, which account for the vast majority of threats to human life.

Prior to 2015, the naming system was fraught. One issue was that very little might be known about a disease early on; nonetheless, some kind of name is required, because it’s hard to fight a nameless menace. The first case of Middle East respiratory syndrome was identified in Saudi Arabia in 2012, but three years later there was an outbreak in South Korea. Lyme disease, which was named for the town in Connecticut where it was first identified in 1976, is now a problem throughout North America, as well as in Europe and Asia. Time turned these nomers into misnomers, but by then, they had stuck.

The advent of the internet has made things only worse, because the name can potentially travel farther and faster than the disease – especially given that the person assigning that first name is more likely to be a government minister, bureaucrat or journalist than an expert in disease. Given such constraints, the WHO came up with its 2015 guidelines with the modest goal of preventing the worst naming sins, before the ICD could assign a name based on more knowledge and deeper reflection. Then it circulated them far and wide.

Under the 2015 guidelines, infectious disease names would no longer single out places, species or human groups defined by their sexual, religious or cultural identity. Nor would they include alarming terms such as ‘unknown’ or ‘fatal’. Such monikers as Rift Valley fever or Legionnaires’ disease would never fly, though disease names already ensconced would not be changed.